But doctors say what’s more shocking is how many people are having trouble making it to appointments even though they still have insurance and a job.

“One family missed a couple of appointments because the mom and dad work in the same place. They’re feeling like they have to be at work every day so they don’t get laid off,” says Barbara S. Adams, MD, a pediatric rheumatologist at the University of Michigan Health System in Ann Arbor.

Other doctors say they’re seeing the same thing.

“Yes, it’s a much more common problem now than it has been in the past,” says Daniel Lovell, MD, a pediatric rheumatologist at Cincinnati Children’s Hospital Medical Center, which serves patients in Ohio, West Virginia, Kentucky and Indiana.

“If your child has a more severe case or is in a more active phase of disease, those visits could be as often as every couple of weeks or a month and that can end up being enough days off of work that it puts people at jeopardy at work,” Dr. Lovell says.

Rheumatologists say their adult patients with arthritis are cutting their health care, too. 

“The thing that has surprised me so much is the generalized anxiety in the population,” says Leslie J. Crofford, MD, chief of the Division of Rheumatology at the University of Kentucky Hospital, in Lexington. “People are afraid of losing their jobs so they want to minimize the time away. So for example they’re afraid to take the time off to get their blood drawn, or they’re delaying appointments so they don’t have to miss a day of work.”

The Dangers of Uncontrolled Disease

Doctors say in some cases, patients will be OK if they miss an appointment or two. But in other cases, there could be serious consequences.

“For us as a doctor, the whole issue is, if we don’t see kids often enough to know what is going on and what may be going wrong, then their disease can become a lot worse,” Dr. Adams says.

That goes for adults, too.

Doctors say regular visits and routine blood tests allow doctors to notice changes in disease activity and change medications if disease activity escalates. Failure to control autoimmune conditions like rheumatoid arthritis and juvenile arthritis can result in long term joint damage and impaired function.